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Estibaliz Urarte
Communications Manager

New webinar — Patient advocates fostering research in oncology: the Share4Rare experience

Webinar ALAN
New study!

Long-term effects of the treatment of acute lymphoblastic leukemia (ALL) in paediatric patients

On September 2nd a new Share4Rare webinar will take place with the aim to present the acute lymphoblastic leukaemia research project.

One of the pillars of Share4Rare is to enhance collaborative research. For that purpose, at the end of 2019 the platform started piloting four research projects concerning several groups of rare diseases. One of these projects is focused on investigating the natural history of paediatric ultra-rare tumours and another one on analysing long-term side effects of paediatric acute lymphoblastic leukaemia (ALL). The latter will identify and analyse the side effects caused by the ALL therapies 3 years after remission through the information provided by patients and caregivers in specific questionnaires. This study is being conducted thanks to the collaboration of the CLOSER project, the Acute Leukaemia Advocates Network (ALAN), the Josep Carreras Leukaemia Foundation and several patient associations.

In this webinar, the speakers will present the ALL study and will place a strong emphasis on the importance of collaborative and patient-driven research and on the role of patient advocates in research in the oncology setting. Surely a great chance to learn from the experts and get involved in international research initiatives!


  • Welcome notes 

  • Share4Rare platform: improving the life of patients with acute lymphoblastic leukaemia 
  • Advocacy in oncology: how to contribute to patient centric research

About the speakers    

  • Samantha Nier, Network Manager of Akute Leukemia Advocates Network (ALAN) 
  • Begonya Nafria, Coordinator of Share4Rare
  • Dr. Bettina Ryll, Founder and Chair of the Melanoma Patient Network Europe  


This hour-long webinar will take place on Wednesday September 2nd, 18:00 CEST. Those interested can register here. If you are interested in boosting patient-driven oncological research, do not miss out this great opportunity. See you at the webinar!


Related diseases
Acute lymphoblastic leukaemia